I'm so confused

I wake every night like clockwork. Dreams yes. That's when I wake to use the room. It's weird. I don't have a pouch anymore. I have an end ileo. But when I had a pouch it was worse. 

It's weird because I am sewn up and have dreams about having to go and it wakes me slightly and it's full and I have to empty.  It's a good thing though. In the time I've had it so far I have had no accidents and sleep better. These dreams usually happen in the first two hours and the rest of the night I'm out like a light. I think it's normal. But everyone experiences are different but close to the same.  Does that make sense? 

Richard. 

Having to deal with both a J Pouch and lactose intolerance for 29 years now, the best way to sum it all up is trying to get a good night's sleep is like trying to find a needle in a haystack.  It's just miserable as hell now living with this chronic illness. The only real 2 things that can save any of us now are a successful colon transplant or death.   

Richard it does make sense now. Often times in my dreams I'll be looking for a clean bathroom. Then I wake up, but it's a good thing I wake up after having these dreams. If I didn't wake up, I probably would've had an accident in my sleep.

Scott I'm sorry you're having such a hard time now. I'd be scared to get a colon transplant because my body might not accept it. Plus I have fap, so if I did get a colon transplant it could grow polyps on it.

A little harsh Scott,

(not untrue for some of us but harsh nonetheless)

There are different things that you can do EricaLee to see if there are in fact subtle patterns that you are missing.

My favorite is a food journal...you write down what you eat, when you eat it, what you eat or drink with it and what meds you took...the time of day is important too...Some of us process certain foods better in the morning than at night, others can eat anything at any time and always get the same result.

Foods react differently if you eat them with water/wine/juice or pop as an accompanying drink...Hot drinks change the dynamics when you eat (drinking coffee with your food makes it go through a lot quicker for some of us).

So you need to note all of these factors down...The same meal eaten with grape juice or coffee may take you 3hrs from intake to output but if you only drink water with it, it may take 6.

Stress, nerves etc can also effect things along with your level of exhaustion.

The less I sleep the more I eat...the more I eat carbs, the less I sleep...Vicious circle...so my trick is to cut out carbs, eat lots of high-quality proteins and veggies and I sleep like a baby...

The other way is to do an elimination diet...eat only one food for dinner (chicken breast is my favorite 1st choice) and see how you sleep with that...Try different meats each night then slowly add a vegetable or a carb...when you stop sleeping through the night or start sleeping through you will have your answer.

Sharon

An end ileo was the answer for me. The pouch was miserable and just 26 months of it was enough. It was slowly killing me. Like a cancer.  I just didn't realize it.  It was worse than the original UC I had. 100 times worse. Seriously.  

Some avoid the end ileo at all costs and live with a pouch no matter what. I wasn't willing to do that. I couldn't. 

It's another hard decision.  Very hard because there is no reversal. It's done.  Now that I have one and have for a year and a half. It was definitely the right decision. 

As for living with it that long. 29 years.  I wouldn't have made it.  I don't know if the end ileo would help you.  Once I got the ileo I slept and continue to sleep like a baby. Something I have not done in years. I may have to get up and empty once. Twice a night but I fall right back asleep. I've slept a solid eight hours before more than once. Unreal. Wonderful. 

Ya. I think the dreams are weird. If the dream wasn't there and it didn't somehow wake me I think a few times it would have blown a gasket. Lol. But it has not so far. 

I am very fortunate this has worked for me. I found my answer to better health and mind. Something I never saw coming anytime soon.  And no matter what anyone says when it works well it's very easy to live with and come to terms with. Don't even think about it most of the time. It's more or less normal.  And no big deal. I avoided it too. Now I don't know why after having it. 

I'm rambling. Sorry. 

Scott. If it's that bad I would look into it. It ended my misery. My surgeon said it would in the beginning but I held out as long as I could. But she was right.  I was thick headed.  It all stopped the day she took it out. 

Richard. 

I go through the same thing every night.  So, I just try to stay in bed from like 10pm to 8am (10 Hours).  I never sleep the 10 hours straight. But my goal is if I add up the 2 hours here (wake up go to the bathroom), plus the 3 hours there (go to the bathroom again), and then the last 2 hours (go to the bathroom another freakin time).  Maybe the sleep intervals will add up to a like decent 7 hours. 

Doing all that gets to a person mentally and physically over time. It just eats away at you slowly but surely.  Not just the no sleep but everything else that has to be dealt with maintains a pouch. It's alot if work if there are problems with it. You end up maintaining a pouch instead of just living life.  I couldn't do it and now that it's gone I have moved on. No maintains anything. Well.  A little. But not what was going on when I had the pouch. That was daily and every night. What I have now. I change it and forget it. No pain. No drugs. Its pretty well working on its own. 

I know some Pouches do too.  But there were a few times on the way home from work(it's 22 miles one way) I was thinking how easy it would be just to let it go in a bag. Instead of trying to hold it or actually going in my pants while driving. And I was right.  It is easier. Same thing when I go to bed. I don't have to worry about it anymore. It takes care of itself. And that is all that we want. To be in a place where you are comfortable. I found mine in a place I avoided.  It's a good place.  Because it works. 

I am not trying to talk anyone into an end ileo. It's not for everyone.  Mainly stigma associated with it.  If I didn't tell you I had one you wouldn't know. 

Richard 

There's nothing wrong with having ileo. I though am going to try to make it with this j pouch. It's only been 3 months since I had the takedown surgery. 

Oh. 3 months. Definitely. 

I was told minimum 18 months for it to straighten out. 

I gave it 26 months.  

It's a huge adjustment and takes more than 3 months.  Body and mind. 

I hope it smooths out for you. Truly. 

Richard. 

It has been 8 months for me and doing well.  Still some adjusting, but so far it has been good.  Give yourself time! I very rarely get up to use the bathroom unless it's to pee.  We also have a very old dog, so I end up getting him up and then try to go back to sleep.  None of it is pouch related lack of sleep.  Immodium before bed also helps.

It good to hear people that have em that work. I know you guys are out there! 

I can relate to the old dog syndrome. I have one 12 and a 13 year old. Another that's 5. She is the one I don't trust. Lol.